Gluten Free Diet Confusion Revisited

Today I got a really strange comment to my blog.  And, yes, I deleted it, because I wanted to be able to comment on what I feel is an incredibly dangerous opinion in response to my GF Diet Confusion post.  Here it is and below are my feelings on this post.

“These are true assumptions about gluten. But I am not going to be strictly GF simply because I CANNOT live without eating something. I am a human being. I need food. I need different kinds of food, especially those that are rich in vitamins. Bread might have bad gluten, but hey – I am unsure that I am celiac also!
Besides, I plan to stick to the best organic dark brown (or is it called black) bread that I can afford. Fortunately it has no yeast or sugar etc.
I would also like to comment on your blog about the right to share information. On my blog I have written a few articles about gluten as well as casein and candida infections. I am not a physician. In fact I am only 22. What I do is share my knowledge of the world. This is not bad in any way. I have also clearly stated that my posts reflect what I know about the world, and not what is truth actually.
People are clever – they might stumble upon my blog and learn something new. Then they read I cannot rule out grains… because I am simple and poor. I prefer to learn more about my body and its sophisticated needs. That way I can find out the truth about my own personal constitution. It is so clear – people will kinda know me as a person.
I hope you got my idea!

– First of all, I’m hoping this is a native speaker of a language other than English, and perhaps that will help with some of my immediate alarm.

-Secondly, if you are CELIAC, gluten will ultimately kill you in slow and degrading ways.

-Third, gluten intolerance is currently thought to be autoimmune as well, so there’s not a good reason to risk it when there’s so much rice in the world.

I’d like to say to this person that I’ve been sick most of my life; there is not a single day that I wouldn’t give anything to have back, knowing what I know now.  I’m chronically anaemic, I suffer from debilitating pain and have problems with practically every part of my digestive system because (I believe) of a diagnosis that took entirely too long.  I’ve run up TENS OF THOUSANDS of dollars in medical bills (most of which I cannot ever dream of repaying); endured painful and ultimately unnecessary surgeries, treatments and degrading testing; and been treated like a loon by more medical professionals than I care to recount.  I would never have had to endure a bit of it had someone known to test me for Celiac when I was much, much younger (my mother thinks around age 8… almost 21 years ago — it apparently came up, but my childhood doctor couldn’t get the testing supplies).

I’ve been denied the ability to make a decent living, I cannot get affordable medical insurance that’s worth having (I currently have a $15,000 deductable), my dreams have been destroyed by the fear that at any moment a complication could rear its ugly head.  I am studying to teach Online so that I can continue to work and not be forced to live off of the meager safety nets that America has in place (but it is highly unlikely I will ever be able to hold a full time job because dealing with my complications is pretty much a full time job).  I am isolated because of my embarrassment that I might have to explain my disease to someone new.

If you have a problem with gluten that is autoimmune in nature, if you’re aware of it and you choose to ignore it, you’re sentencing yourself to a life of pain, loneliness and frustration.  Welcome to my world; it’s not a pretty one and not one I would wish on anyone else.  I will continue to do what I can to improve the lives of Celiacs and to further the migration of verified and proven information as long as I live… with any luck, the generations of Celiacs that come after me will be diagnosed more quickly and suffer fewer of the effects of long-term exposure to gluten.


2 comments so far

  1. amalissy on

    Hi there,
    I found you via the recipezaar site. Well done on all your GF baking recipes. I’ve been GF for nearly a year now, and have yet to try a pizza crust. I think you may have persuaded me with your recipe! Hopefully one slightly ambiguous post is balanced by this complementary one – keep up the good work.
    Amalissy in France

  2. Suzy on

    Hi Kristi, I also know you from the GF forum on Zaar. And wow, a post like that would make me freak out, it truly would!!! I am not gluten sensitive, or at least I think I’m not, but my now 2 year old daughter is. We have been lucky to have found out so soon, she’s been GF since her first birthday and man, is she thriving at the moment. I’m so sorry to read that gluten has made your life miserable for so long :-(. Your generosity in helping others to cope with the challenges of GF living awes me. I found that lots of celiacs worldwide are, like you, willing to offer help and support, and that comforts me a great deal. Thank you for all you’ve been doing for the likes of me and my little girl! Best wishes

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